Tag Archives: Glioblastoma Caregiver

The caregiver life, hopes and dreams

You can’t imagine the frustration of wanting to leave the house but not being able to on such a long term basis. This summer I have had more freedom than I have had in a long time. Lately with my oldest and the grand baby not living here I’ve had many opportunities to leave my son in charge at home and leave the house. It’s been amazing, but tomorrow school starts and I won’t have the same freedom and backup like I’ve had over the summer. Over the years I shelved personal hopes and dreams. I had to come to a place where I was completely content having my life revolve around being home and taking care of Mike. As school starts tomorrow I find myself reminding myself that home is where I belong and that I can have complete contentment right here at home. It just takes some rebalancing and centering of my thoughts. I have taken on some work days with a photography company, starting hanging out with new friends, going to church again and have gotten a taste of life outside the house. It’s bitter sweet enjoying the freedom but it being limited. 

Its one thing to have kids and find a babysitter, but I find myself with no options for a “sitter” for my husband. (If there was an emergency I have people who will drop everything and be here. I’m talking about just wanting to leave the house) I know there are private companies, nursing homes, adult day cares – but for one reason or another they are not the answer for us. His comfort, our finances, etc.

I need to blog more on the daily life of caregiving. I think people don’t realize the intensity of caring for someone who can’t care for themselves. Mike was up at 3am hungry. He can’t even pour a glass of milk, make toast or a bowl of cereal. So yesterday morning I was up at 3am and took the opportunity to shower him. He can’t shower himself and he often refuses to shower in the moment. He always says “later” but later never easily comes. So I showered him, dressed him and fed him. Then I let him lay back down. I spent some quiet time with God thanking him for the blessings in my life (because there ARE so many blessings.) I prayed for peace over the house and an ease to take everyone out to church. I loaded up the wheelchair and we went to church. While we were out I decided to push our luck and try a fun outing. Mike started to complain of feeling weird, overwhelmed, exhausted, and head hurting but we went for it anyways. We ended up having a beautiful day out of the house.

There are so many dynamics to being a caregiver to someone who has brain issues. There is awkwardness when a waitress asks a question and he doesn’t understand. I have to keep in mind that he gets confused with utensils easily so I either have to cut up his food or order him something that won’t confuse him.  There’s the blindside and the fact that there is a likely chance he will swipe anything off the table that is to his right. The fact that many places do not have family restrooms and he isn’t stable to walk well on his own often. The physical toll of lifting him when he can’t stand. The physical toll of lugging around a wheelchair and getting him in and out of the van and in and out of the wheelchair. The fact that he can’t be left alone ever…at home or in public. If I were to take him somewhere alone I can’t leave him at a table or in a church service to go to the bathroom. That many times places just aren’t really handicap accessible. Don’t take this as complaining; it’s just awareness. There are family members out there of caregivers that have no idea what they really go through and I barely scratched the surface. Many are completely bedbound. As hard as life is with Mike, I am passionately thankful for th me aspects of our life that are blessings.

I will continue to be so thankful for his life. Many others like John McCain don’t have the chance to live 6 years after diagnosis like Mike.

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As I was scrolling through photos. This one came up. This was a day I was able to leave the house and was really excited to come home and tel Mike about my day. He wasn’t mentally there for conversation that day and slept the entire day. This is the norm. He spends most of his time in bed. I try to stay lighthearted about it so I laughed about him rolling over and going to sleep when I tried to talk to him. I might get mad at our situation but I never get mad at him or take it out on him. This isn’t the life he would choose either. I hope something in this blog touches you in some way. I hope it brings awareness or comfort depending on your situation.

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Look what the Lord has done!

I had an opportunity to hang out with Revival Worship Movement at the Chesapeake Jubilee this past weekend. If you know me or have read this blog, you know I can go on and on telling our story. I have a lot of words to say! There are SO many layers to it and it’s actually 22 years in the making. It all started with a prophesy 22 years ago when God said “I will turn the heart of one around. Your prayers regarding his life will come to pass.” We’ve seen physical healing, family healing and heart healing. As I stood there during that worship song, I realized God didn’t want me to beef up our testimony with lots of words this time. This time I was just to share briefly enough to say “Look what the Lord has done!” I don’t think I’ve EVER summed up our testimony in less than 2 minutes, even with a random person at the grocery store. It was a simple message of hope. Thanks to Terrance Howell and Revival Worship Movement for giving us a chance to share what God has done.

Untainted Love by Revival Worship Movement is available for purchase at the following links!  Amazon  Google Play  Itunes  Spotify Tidalshauna


Inspiration

I’ve realized lately that being an inspiration really drives me. Not in a way that I want attention or that I feel like I’m receiving some kind of praise, but more in the sense of wanting others to be better, to feel better, and to have hope.  If I can share my experiences and if that sharing can result in others having more hope or for them to find the energy to push through something they didn’t think they could face, or for them to have a desire to pay something forward and help someone else – that makes me want to share more. I want to see lives improved, refreshed, and uplifted.

I haven’t been sharing a lot lately for several reasons. Our life doesn’t change much day to day and there aren’t medical updates. In the beginning I was learning how to navigate Glioblastoma and I had three purposes for this blog – To give God the glory for the healing that I believed was going to happen, to keep friends and family updated, and to help others navigate their diagnosis and give them hope and inspiration.

Our experience with Glioblastoma is not a normal experience because Mike is still here 4.5 years later.  Now I’m learning to navigate an entirely unplanned situation.  I like to plan and I like to have an idea of what my future holds. Even when the prognosis was scary, there was comfort in planning.  I had to plan for him to pass away as thats the normal outcome of someone diagnosed with Glioblastoma. I have learned that I have no idea what life has in store for my family.

….Then I realized that life would be hard either way. That losing him would be unbearable…and I also realized that this new normal wasn’t going to be easy or full of enjoyment either. I’ve had to embrace that its ok to feel that way. That I shouldn’t feel guilty for grieving what we had or what we thought our future held. I did lose a lot with his diagnosis. He is here but there are many things that we grieve that are no longer here.  I had to realize that I couldn’t prepare for the future.  I have to just face it each day and navigate the best I can. I’m a wife in my 30’s – but I feel like I’m living a lifestyle of someone much older. He’s like a dementia/alzheimers patient. Going from having a husband who was a strong head of household in many ways to now being the head of the household has really been a transition for me.  All responsibilities fall on me. I now have a husband who doesn’t understand how to pour himself a glass of milk.

I’ve grown so much through this experience and I want others to know that whatever it is that you are facing – you can do it.

Having a husband on hospice and a 15 year old daughter who was pregnant felt impossible.  We did it and we are still doing it.  I could have given up. I could have decided I couldn’t face the next day. But I didn’t. I fought through to see the joy that I knew was coming. I’ve always held onto the thought that joy comes…if you hold on long enough, you will have a moment that made all the hardship worth fighting through.

Establishing a successful business felt impossible with the limitations of being homebound and taking care of such a hectic family – but I’ve made Trainer with LuLaRoe and have been absolutely blown away with the success of my business.  For many months I thought “Ok, I will keep putting one foot in front of the other until I fail, and then I will throw in the towel.” I gave myself permission to fail before I even started. In my mind, I wanted to go ahead and try and get the failure over with so I could get that desire to try behind me.  I knew I wanted to try selling LuLaRoe. I figured I’d fail. Guess what…I’m 6 months in and instead of bracing for failure, I’m now excited to continue to build my business.  Sometimes you have to face a situation with tenacity. You have to dig deep and you have to fight to get through some things.

So here I am – hoping that I can give  you some inspiration to face those things that feel impossible. New diagnosis, scary prognosis, personal situations – whatever it is, you’ve got this!

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Glioblastoma – Long Term Survival

This information is easy to find when newly diagnosed with Glioblastoma:
“The median survival of glioblastoma patients is approximately 12 months. However, 3-5% of the patients survives for more than 3 years and are referred to as long-term survivors.”
 
This part, however, somehow I never came across until Mike experienced it:
“When long-term survival does occur it is often accompanied by severe treatment-induced dementia.”
 
I remember so clearly Mike talking about the “life reset button” that he felt he was given. If he had known the future, he probably would have been tempted to opt out of treatment. I’m glad he didn’t know because he wouldn’t have understood the plans God had for him or understood the lives he’d touch by his tenacity to face each day.
 
By the time a person is diagnosed with Glioblastoma, their ability to research and advocate for themselves is usually pretty limited. Due to brain swelling, Mike was severely confused. I’ve walked many people through the first weeks of diagnosis…the hard part is knowing that long term survival is rare…and even if they are “blessed” with long term survival, chances are their lives will never be the same. I’m about as thankful as they come…but some days don’t feel so blessed. That’s the reality of what we are living.
 
May was brain cancer awareness month and I’ve learned that GBM is more common than I ever realized. God placed in our path a widow who had walked out GBM with her husband before Mike’s pathology even came back. She was a friend of a friend. Because of that, I felt two steps ahead because I was able to research. Sitting in the doctors office and hearing GBM – I already knew what we were up against and I had already done research. When the surgeon told me NOT to go to Duke or ask for a second opinion, I already had my mind made up that we were going. Had I not already done the research, I might have never pursued the brain tumor center at Duke.
 
Just some random thoughts as Mike’s official 4 year date of his first surgery and diagnosis is coming up. 4 years ago he had a deadly brain tumor that was growing and causing havoc, we just didn’t know the extent of what was going on in his head just yet.

“I’m proud of you”

At about 1am after an exhausting day, I finally got into bed to sleep knowing I had to be up by 6am.  Mike talks a lot as I’m trying to fall asleep and he kept saying “I’m proud of you. I love you.” And guess what, I woke up proud of myself.  We have been together for 18 years and a lot of negative words were spoken in those 18 years. A lot of people who know us now would be surprised at the struggles we had. I’m pretty transparent about our lives in hopes to help others. Words are SO powerful.  They have the ability to speak life into someone or totally tear them down and destroy them. Words have healing power. Do we want to build up our loved ones or destroy them?  Use your words wisely and speak life into those you love. Words are creative.  Negative words can creative a slew of destruction including insecurity and doubt. Negative words cause pain. Pain causes destruction. Negative words can destroy marriages and relationships. Positive words can CREATE. How COOL is that when you really think about it?  By what we speak, we can create hope, love, encouragement, excitement, motivation, relationships! I could go on and on.  I think all too often we like to blame someone for their actions against us but we take no responsibility for our words or attitudes towards them.  Our words don’t even have to be specifically against them to destroy a relationship with them.  Negative words are not going to return to us in positive actions for the most part. It takes a whole lot of grace to respond to negativity with something positive. I’m not saying I’m positive all the time. Yesterday was an emotional day for me and I ended up in tears several times. The thing is, I don’t unpack and live there.  Facing the tough parts of life and then focusing on the positive is not only my goal. it’s my survival strategy.

We have a responsibility to speak life into those we love. This is so important for those with brain cancer and their caregivers too. If you are suffering and you have a caregiver, you can breathe so much LIFE into them by thanking them. Build them up with words, tell them they are doing a good job and that you appreciate them. I bet they will be motivated to take even better care of you. If you are the caregiver, you can build up your loved one by using words to show them they are NOT a burden to you. Let them know it is an honor to care for them.

Sometimes with brain cancer, depending on what area of the brain is damaged or where the tumor is located,  no matter what you do, there is anger and aggression.  (It’s not limited to where the tumor is located. Sometimes the brain has swelling and that swelling causes pressure to another area of the brain.  Different areas control different functions, but swelling can cause your loved one to have functionality issues in different areas.)  It’s hard to let those words and actions bounce off us as caregivers. It’s hard to not let that cause damage to us and our relationships.  I personally pray for grace in those moments. I’ve prayed for protection over my kids that in those moments that there is a hedge of protection around them.  I’m trying so hard to lead my example for my kids. If they see me act in patience and kindness, they are more likely to do the same. I learned this the hard way. When I react to some of Mike’s behaviors with frustration, the kids do too.  I don’t always succeed, but I do better than if I didn’t try at all.  I’m human and my first instinct isn’t always to act in love and kindness. This is an interesting graphic about what areas of the brain can affect different functions. It is interesting to see because Mike’s tumor was discovered in his left occipital lobe and he can’t read because the letters don’t make sense anymore.

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Functions of the brain

Proverbs 15:1 ESV
1 A soft answer turns away wrath, but a harsh word stirs up anger.
Ephesians 4:31-32 ESV
Let all bitterness and wrath and anger and clamor and slander be put away from you, along with all malice. Be kind to one another, tenderhearted, forgiving one another, as God in Christ forgave you.
I figured I’d also share a photo of me and my grandbaby in our matching LuLaRoe leggings!  I have a whole blog post to share about being a caregiver and taking care of ourselves, so you will probably see this photo again as I’ve just recently stopped living in pajamas and actually getting dressed and taking care of me again. It was totally normal for me to shower and just change into another pair of pajamas each day because I didn’t see the point in getting dressed when I knew I wasn’t going to leave the house.
LuLaRoe Leggings

Here’s my grandbaby rocking matching LuLaRoe leggings. They aren’t just for Mommy and Me, we like to “Grandma and Me”

 


Christmas Baby!

I am sorry that it has taken me so long to update. Things have been crazy, as you can imagine. I’m so proud to announce that our Grandbaby was born on December 25, 2015!  She is 3 weeks old and we all love her so much. The labor and deliver went smoothly and our daughter was amazing throughout the whole process. I was able to be in the room for the entire labor and delivery because my sister, brother and law and mom all stayed at our house to take care of Mike and the other two kids. Another cool fun fact is that they came home from the hospital ON MIKE’S BIRTHDAY!  What a birthday gift!

As you look at these photos, I hope that you see God’s grace.  I’m so proud of our daughter for choosing life.  Becoming pregnant at 15 was overwhelming, but God’s grace has really been present through this entire situation.  We are closer than we have ever been as a family and we have more joy than we have ever had. I am devoted to guiding Kayla in  motherhood and making sure this sweet baby is loved and provided for. We’ve got this.

Mike was able to meet his grandbaby in the hospital and I will share the video that captured him meeting her. The very last few second is the best.

Another exciting fact is that this month we celebrate that Mike has been on hospice for TWELVE MONTHS!  Praise God!  He is 43 months PAST GBM DIAGNOSIS!

Caralyn Elizabeth Emmons born December 25, 2015. 7lbs 2oz, 19 inches long.

 


Hospice – Glioblastoma Update

I look around and see the Kindergarten homework, sparkly shoes, silly artwork, video games and funky teenage combat boots. Today is a half day for the kids leading into a 4 day weekend.  Before cancer entered our lives we always left town on long weekends.  Long weekends were always our time to reconnect, re-energize and have some adventure.  Instead of packing up for a weekend at the Outer Banks or some other destination, today Mike was officially admitted into home hospice.

What makes this especially difficult is that it isn’t something I can talk out with my husband. My person.  The one who always helped me sort out big decisions like this.  For awhile Mike hasn’t been able to comprehend his illness. He hasn’t understood why his head hurts or why he can’t “think right” as he says it.  He doesn’t remember the brain surgery, radiation or chemo most days.  The last several appts we went to for treatment, he didn’t understand why he was there getting an IV or what medication he was getting and why, even when we told him over and over again.  The last appt he told me he was tired and didn’t want to do this.  It has taken every bit of him to just walk into the office lately and he reluctantly accepted a wheelchair to get down the hallway after we got into the office.  It has been months since he left the house for something other than doctor appts.  The ugly reality is that I don’t even remember the last appt when he was able to walk into the bathroom on his own and provide the urine sample in the cup without my assistance.  Not a glamorous piece of information, I know…but that’s the reality of it.

At this point he doesn’t remember conversations. He will ask me every two minutes where the kids are, even in the middle of the night if he wakes up.  Most people would just know that their kids are in their beds under the same roof, but in his mind that logic just isn’t there. Talking to Mike about his treatment options have only left him in a state of confusion and distress each time.  Any conversations about brain surgery or his diagnosis just leave him devastated as if he is hearing the diagnosis for the first time.  I’m hesitant to post this because I do not want anyone talking gloomy to him or mentioning the word hospice.  This may end up being a very private leg of this journey for our family.  He is fine with the nurses that come into the home, and he is relieved to know that he doesn’t have to leave the house for doctor appointments anymore, but I do not want him brought down by sad conversations or devastated at the word hospice being said to him.  That is not a moment of sadness that he needs to feel over and over again, and HOPE and POSITIVITY is important.  We will let him live each day to the fullest with the most comfort possible, physically and emotionally.  I will hold onto hope of a miracle, even as we are faced with hardships and an obvious decline.  I will strive to rest in confidence that each day is already paved out before us.

**Just so we are clear since I am sharing this, Do NOT have a conversation with him about hospice.

At this point his body and brain are functioning so poorly that comfort care is the best goal for him.  Since there is nothing further we can do, it’s in God’s hands.  In God’s hands isn’t a bad place to be.  God is bigger than cancer, bigger than treatment, bigger than the damage we have seen.